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Stuck in a rut! Husband struggling with metastatic cancer

AdeleL51
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My husband was diagnosed with metastatic cancer is April 2020 a month after going into lockdown. To say its been the scariest 3 months of our  lives is an understatement. Nobody could visit, no hospital contact other than phone calls a feeling of complete and utter abandonment. He's struggled with severe sickness, no appetite and has lost so much weight and has also had to contend with other health issues as well as side effects of the medication along the way. We have been told that although the cancer isn't curable is may be managed if they can find the right drugs. We haven't yet but it seems that time is on our side so maybe the next cycle of treatment may bring better news. At this point it seems that its the medication that is making him so unwell and not the disease. He can hardly walk as he has cancer in his hips and getting around the house is a challenge. He is so weak, gets confused, and obviously feels extremely frustrated that he has to ask me to do things for him.

I guess I would really like to reach out to anyone in a similar situation. I worry that I'm not pushing hard enough to get support, equipment or help. We do have a lovely MacMillan nurse on board who was coming as and  when needed but has now said that she is going to come weekly.

It feels like we are trying to run through marshmallow and not getting anywhere fast.

Any advice, guidance or shared experiences welcome.  

Thank you in advance 

 

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    Hi Adele

    I'm Maria and I'm in a similar situation. My husband was never sick then was admitted as an emergency with sepsis November 2017. A bowel tumour had burst through his bowel wall causing the infection. Since then it's been a roller coaster of chemo operation meds and more chemo. He was sent to Basingstoke last Nov for this surgery and treatment that would help. Unfortunately the cancer spread 2 months later. He is back on chemo when he is fit enough to get it. From March I havent been able to hug my grandchildren. I feel so lost and alone. My husband doesnt like to talk about his feelings and feels guilty about not seeing the grandchildren. You might need equipment for your husband. You need to ask your husbands Gp for an O/T and palliative assessment referral from the district nursing sister. The district sister should assess your husband that is on top of the mc millan nurse. Good luck. Maria

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    In a similar situation here although my husband has been diagnosed this week. His cancer is terminal and we are not sure what is going to happen next. However, he has deteriorated so quickly, I am mighty scared. 

     

    I hope things get easier for you x 

  • Offline in reply to Eimhin

    Hi Maria, well just reading your reply has helped me to feel.connected. I know there are others out there in the same/different/worse/better situations but not.having appointments or chemo administered in hospital eats that you don't have the same 'chit chat' with other cancer patients and their partners/carers. Its horrid having such a big family and not being able to reach out and mostly to your grand kids. Where abouts do you live? X

  • Offline in reply to Cinders.21

    hi Cinders, what is the prognosis for your husband? Or is it unknown at the moment. I already feel that this sight can be of huge benefit to all those touched by this disease. Where abouts are you? X

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    Hi .

    Alot of things you need you nearly have to fight for .

    You should have occupational therapist come to assess what he needs and arrange things for you , I'm onPalative care have been since Feb 2016 different cancer to your husband , prostate, cancer gone to lymph nodes spine ribs pelvis and a lung .

    I'm actually a carer for My darling wife she has Alzheimer's and Parkinson's plus a few other things.

    We manage okay it's getting into a routine and keeping positive. 

    Good luck with everything .

    Billy.

  • Offline in reply to Billygoatt

    Hi Billy,

    Thanks for the reply and literally in the past few days i have realised that you do have to fight for everything. 

    Unfortunately he has ended up in hospital and isn't doing great at the mo but this all seems to me medication related and not disease specific, or so they think. But i guess with cancer you never know when its just going to spread or how quickly.

    Still, i live in hope that he will be home with me in a few days. He's got to be hes bought a new car on Wednesday!!!

    It sounds like you have well and truly got your hands full dealing with your troubles and caring for your wife.

    Do you have support from family and friends too?

    Adele 

  • Offline in reply to AdeleL51

    Hi Adele.

    No family help at all.just carer's in the morning to wash my wife everything else I do housework, cooking.

    A lovely neighbor does weekly shop,I usto do it before I had a bad do when oncologist changed some of My meds I'm not fit to drive now.

    I'm on palative care, have been since beginning.

    Just living with my uninvited guest.

    Keep positive.

    Billy

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